23 with autoimmune disease making health changes, Anyone else here with autoimmune issues?

Hi there! I haven’t been diagnosed yet, but hoping the neurologist I see in March will have some answers. I deal with joint/muscle pain and weakness, fatigue, and brain fog almost daily. I’m happy to hear that you’ve been feeling better! I’m sure it’s an amazing feeling would love to support each other in this!

It's great that dietary changes have made a difference for you health and weight wise. Keep up the great work!

I have sjogren's too...mostly dry mouth (so far) for me that I manage with suitable oral products (oral mousse, toothpaste, xyiltol gum).

I had heard flaxseed oil was good but I couldn't stomach it. I have just recently started Ubiquinol BioActive. Ubiquinol is a form of Coenzyme Q10. I am not sure it has actually been proven to help with sjogren's but the antedotal information I have read suggests that it does help for some people (but who knows). There is also some suggestion that it may help with protect gum tissue, and thus may help prevent decay for which those with sjogrens are highly susceptible to.

I have Myasthenia Gravis.

tiptoethruthetulips wrote: »

It's great that dietary changes have made a difference for you health and weight wise. Keep up the great work!

I have sjogren's too...mostly dry mouth (so far) for me that I manage with suitable oral products (oral mousse, toothpaste, xyiltol gum).

I had heard flaxseed oil was good but I couldn't stomach it. I have just recently started Ubiquinol BioActive. Ubiquinol is a form of Coenzyme Q10. I am not sure it has actually been proven to help with sjogren's but the antedotal information I have read suggests that it does help for some people (but who knows). There is also some suggestion that it may help with protect gum tissue, and thus may help prevent decay for which those with sjogrens are highly susceptible to.

Omega-3 fatty acids (DHA/EPA) have been shown to help with dry eye and overall inflammation. That may be why flaxseed oil was recommended, although fish or krill oil are better sources. There have been studies that show a potential link between Sjogren's and impaired mitochondrial function. Support supplements such as CoQ10 (with Ubiquinol being the active form), B vitamins, and L-carnitine may help in this case. Whether you choose ubiquinol or CoQ10, you should look for a water and fat-soluble form of CoQ10 for better absorption.

flipflop4499 wrote: »

tiptoethruthetulips wrote: »

It's great that dietary changes have made a difference for you health and weight wise. Keep up the great work!

I have sjogren's too...mostly dry mouth (so far) for me that I manage with suitable oral products (oral mousse, toothpaste, xyiltol gum).

I had heard flaxseed oil was good but I couldn't stomach it. I have just recently started Ubiquinol BioActive. Ubiquinol is a form of Coenzyme Q10. I am not sure it has actually been proven to help with sjogren's but the antedotal information I have read suggests that it does help for some people (but who knows). There is also some suggestion that it may help with protect gum tissue, and thus may help prevent decay for which those with sjogrens are highly susceptible to.

Omega-3 fatty acids (DHA/EPA) have been shown to help with dry eye and overall inflammation. That may be why flaxseed oil was recommended, although fish or krill oil are better sources. There have been studies that show a potential link between Sjogren's and impaired mitochondrial function. Support supplements such as CoQ10 (with Ubiquinol being the active form), B vitamins, and L-carnitine may help in this case. Whether you choose ubiquinol or CoQ10, you should look for a water and fat-soluble form of CoQ10 for better absorption.

Thanks Flipflop some good info there.

I also have an autoimmune disease. I have Lupus, it is currently under control with meds, but I would like to get healthier to get off some of the meds.

Auto immunity is regrettably increasing both in the number of conditions as well as persons. It saddens me all you have responded are so young. You all sound to be aiming to recover as much as you can, I applaud you all.

If you can discover the underlying cause/causes of your autoimmunity, the food which is being mistaken for your own cells often called molecule mimicry, you will be helped greatly and your autoimmune numbers will reduce. There are some excellent allergy and intolerance tests available from some American Companies but not all medics will use them. I have Hashimoto's Thyroiditis, much I say below will help with other autoimmune conditions who's contributory factors are the same only the personal reactions are different resulting in the diversity of conditions.

When you look at the long list of foods to avoid it can be daunting, though not everyone will react to each and every food on the list. For this reason I suggest you look at one of the categories and eliminate this alone so you will know if you achieve any benefits from that exclusion. Exclusions can bring nutritional deficits so should be entered into when you have your own alternatives thought out. I am particularly thinking dairy eliminations here. Avoiding milk/milk products deprive you of a good source of calcium, vitamins and minerals including iodine which is needed for thyroid function, recommendation is 150 micron per day, some of us need much more. I excluded dairy and felt an immediate benefit others may take 3 months or so for the body to feel better. People may react to the casein/milk protein and/or lactose the sugar, casein is the more common. A2 milk, contains the second type of casein which can be more easily digested by those who react to type 1 casein found in regular milk, type 1 casein is dominant in most heards. Type 2 is goat, sheep and what we call Channel Island milk over here, these can keep dairy options open for some. Some lactose intolerant can find type 2 lactose levels easier to digest, these are most like human milk. (there are 4 types of casein 1, 2, 3 and 4, 3 and 4 seem to be much less reactive and are present in all dairy but not at the amounts of 1 or 2)

The other key avoidance is Wheat, for the gluten, unfortunately it is also in other grains which makes total avoidance rather complicated. Even when one achieves a good level of avoidance it can take 6 months before the results start to become established and many may take a year, then a slip can tip you back into your health issues as easy as blinking.

I'm uncertain about avoiding cruciferous vegetables because these are the foundation of so many diets, natural ways of eating.

If you can address your digestive issues in the form of digestive transit times, (once or twice a day is seen as optimal) this will aid the maintenance of your personal digestive biome, research is showing the diversity of microbes is most beneficial, slow transit causes the microbiome to reduce as does using antibiotics which are indiscriminate taking the beneficial microbes along with the problematical ones, some other medications including the contraceptive pill which changes hormone relationships, chemicals used as preservatives can also cause issues, high sugar consumption favours thrush issues. I found great benefits from using digestive microbes, particularly ones for use while or after taking antibiotics very helpful. The food particles which cause us issues are able to make their way through the linings of our gut. These are supposed to have tight joints between the sections but with a reduced microbiome and food reactions these become slackened. Addressing all this will help many of us. Flax seeds crushed help with both the transit times and omega provision. Omega comes in 3,6, and 9 forms, type 3 is most beneficial, 6 and 9 need to be in a ratio and lower than 3 which the body can turn into 6 and 9 if necessary. Eggs are good but best not to over do, milk contains some too.

Turning to vitamins and minerals, finding a good supplement can help you overcome the deficiencies caused by poor gut function. Selenium and other vitamins and minerals are required for the conversion of t4 to t3 which is the active form so some of us require more than the recommended daily requirements, your doctor, endocrinologist or functional practitioner should be able to advise. (A functional doctor is someone who goes right back to basics, they why a body reacts in this or that way and addresses these functions with foods or supplements or sometimes regular medications.)

Vitamin b12 requires the right microbes to facilitate it being absorbed, this is known as the "intrinsic factor", so for some with autoimmunity it is insufficient to take b 12, you may need the enzyme, this is why some of us have b 12 injections rather than using pills.

Recently I came across Acetyl L Carnitine, looking for tinnitus relief, I discovered it helps, even at a low dose, with taking away the dull body ache, it did or so far has done little if anything for my tinnitus, giggle. I also came across a condition, said to be rare, "Stiff Body Syndrome", said to be very rare. I do wonder though if some of the stiffness with ME, Fibro, Osteoarthritis and all, might be in part related. Another discovery I made was, Osteoarthritis can be diagnosed 10 to 15 years before a thyroid condition, the connection seems to be the HGH, Human Growth Hormone, it is the third thyroid hormone and is required for cell/bone repair through life.

I'm sorry there is so much above, I add no references because my studies have continued over 10 or more years so I have forgotten many. I advise you to read as much as you can starting from your symptoms. National support sites for different conditions are good places for information. Hospital Scientific Papers and other Medical works are the best. Read with care any, anyone's blogs, they are not necessarily scientific but may show topics for your research, like my thoughts above. I hope you have a doctor or someone to guide you to your best health. Each and everyone of us have our own symptoms and resolutions though the umbrella titles might be helpful.

Me I'm a gt grandmother who's life is better now than it has been for too many years. It started in my early 20's and had taken me too long to achieve an understanding and improved health. I hope it does not take any of you as long to find answers to your health problems. Wishing you all the very best in 2019. Best wishes to you all.


There is a Hyper and Hypo thyroid group on here, mostly redundant now but some of the information on the front page, the links can be very helpful.